The other day I wrote about my many medical appointments this month. There was a time when I’d squeeze an appointment in before work, or go during an extra-long lunch break (which I’d have to make up for after work hours.) Those days are long gone. Now I don’t have to worry about missing work, but I do have to worry about missing life.

As I’ve been feeling better lately, I’ve been spending more time with friends. What a treat that’s been! I do better during the day, so I don’t go out much on weeknights. But I see many friends on weekends, and I have a lot of new friends who also don’t work due to chronic illness, so I hang out with them on weekdays. Seeing one or two friends on weekdays each week has been wonderful! Unfortunately, with so many medical appointments, I just can’t manage it.

Today (Monday) I’m doing things around my apartment that need doing. They really need to be done, but I’m also resting. I have an appointment early tomorrow that I need energy for. And one of the things I have to do today is to prepare for tomorrow’s appointment: I need to prepare all sorts of notes so I don’t forget anything when I’m in the office. Tomorrow I doubt I’ll do anything besides that appointment. Wednesday I hope to do some clothes shopping. I don’t have any bathing suits that fit and summer is right around the corner. I’d like to see friends, but I know I won’t have the emotional energy for it after Tuesday’s appointment. Still, shopping drains my physical strength and causes extra pain, so I always need a full day to recover afterwards. That’s what Thursday will be: a recovery day. And at some point Thursday (or sooner) I need to prepare notes for Friday’s medical appointment. After Friday’s medical appointment I’m going to a Passover sedar with my family. I’m not religious, but it means a lot to them, so I go. I’ll probably have to go directly from the medical appointment. Saturday is a nephew’s birthday party, so as you can imagine, Sunday will be another day to rest. And BOOM! The week is gone!

Last week was pretty similar, and I think the following week will be, too. And of course, I know I’m lucky – a year ago I wouldn’t have been able to manage so much in a week. This is huge for me! Still, I miss hanging out with friends. I miss socializing. I like having quiet time to myself. I don’t get bored easily. I can happily spend a day reading and puttering around. But like many humans, I’m a social creature. I live alone, so on the days I don’t leave the house, I don’t see another human being. Days like yesterday, I might go out and see strangers in passing, but I don’t have any real conversations with anyone.

March is a gray month in Boston. As I write this, the skies are dark and there are some light snowflakes coming down from the sky. I have no desire to go for a walk (which I’ll have to do anyway) or to go outside. Yet, a little company would be lovely.

Like I weather, I know my current social situation is temporary. So I’m trying to make some plans with friends for a few weeks from now. At least that way I’ll have something to look forward to when this ridiculous string of medical appointments is over. And I’m just grateful everyone understands why I’ve disappeared for a bit.

This morning I was talking with a friend. Sometimes I do some budget consulting. I don’t have the energy to do much of it, but I love it, and do it when I can. I always begin with discussing the person’s/couple’s goals. These goals can be anything: buying a house, buying a smart phone, getting a dog, having children, traveling the world, starting a business, retiring young…. there are endless possibilities.

Today I happened to be working with a friend, so it was more casual than when I get paid by strangers to consult for them. After we’d gone through her goals, her spending, her debt, her income, and her savings, we talked some more about goals. And she asked me about mine.

Most people assume my goal is to get healthy, but it’s actually not. I know I’ll never be completely healthy, and I also know I want more than that.

We all had plans that were different when we were healthier. Some got derailed because of health, some got derailed for other reasons, and some were achieved. After my friend left, I thought again about my goals. I think the most unusual thing about them is how often I think about them and change them. Most people, I would guess, hardly ever step back to look at the bigger picture. They assume they’ll do the things society tells them to do, like get a job, get married, buy a house, and have children, probably in that order. But they don’t think beyond that. I know I didn’t. In fact, that’s about what my life plan looked like.

Just before I got sick, I started thinking about leaving my 9-5 job and starting my own business. I didn’t know what that would be. I thought I might try to earn a living off of blogging (spoiler alert: this blog is 4 years old and earns nothing, so that won’t be how I earn my fortune.) I considered some other options. I dated and looked for Mr. or Ms. Right. And mostly I put one foot in front of the other.

Since I’ve been out of work, I am constantly thinking about the present and the future, about what I want and how to achieve it. I change it constantly, as my health and moods change. I’ve come up with several potential ways to work for myself from home part time. I know that I want a dog. I want to improve my health as much as possible while not being obsessed with it. I want a dog. I would love to find a life partner, but I’m also currently content with being single. I want to live someplace quiet and peaceful, preferably near the water. I want to exercise regularly, including physical therapy. I want to be financially stable. I want to spend less time home alone and more time with people I love. And did I mention that I want a dog?

Most people don’t think about their goals often, if at all. Having a chronic illness doesn’t necessarily change that. For some people, it might make them think about their goals less. I happen to go the opposite way. I need something to reach for. I need a happy place to aim for. It gives me a reason to try. Let’s face it, living with chronic illness is work! Reaching for my goals gives me a bit of incentive not to give up on that work.

What about you? Do you spend a lot of time thinking about your goals? Do you avoid them? Do you change your goals over time? What’s one thing on your list?

There’s a child’s game that’s really quite simple called Musical Chairs. The children gather in a circle around a bunch of chairs. Music plays, and the children march in a circle around those chairs. When the music stops suddenly in the middle of a song, everyone rushes to sit in a chair. The catch is, there are fewer chairs than children, and whoever doesn’t get a chair is out of the game. (Each time someone leaves the game, more chairs are removed from the circle.) So you always wonder who will get a chair and who will be left standing.

That’s how my calendar went with doctor appointments last week. I called it Musical Doctors.

When you see many specialists, and each require multiple checkups and followups each year, sooner or later this kind of thing is bound to happen. For me, the game started this time when I needed to make an appointment. A few days before I’d been thinking thinking about how nice it was not to have any doctor appointments lately, how much less stressful it felt, how much more time and energy I had. Then I tried to make an appointment and discovered why I’d been enjoying a blissful break in the doctor hecticness: they were all piled up in March and April! In 3 weeks I had 5 appointments scheduled, with 2 more a couple weeks after that. I often have appointments grouped together coincidentally, but 5 in 3 weeks is a lot, even for me! And suddenly I was scheduling a sixth! It wasn’t easy fitting that sixth one into my schedule, but I made it work.

I was dreading the 6 appointments in 3 weeks. It was overwhelming just thinking about it! But then I took a closer look at my calendar and realized I had an unfortunate conflict. The appointment with the hardest doctor to schedule, Dr. T, happened to conflict with a support group I’m in that means a lot to me. Not only that, but this was a special meeting of the group. It had taken me 6 months to get this appointment. The last time it took me 8 months to get an appointment. Still, I called the office and asked to be put on the cancellation list, just in case.

But I wasn’t putting all my eggs in that basket! I emailed Dr. T and explained the situation. I was clear that I would keep this appointment if I had to, but if it was at all possible to move the appointment, even if it meant waiting a few more weeks, I’d really like to do that. A few days later, I got a call from his office. They offered me another time slot, and I was so excited. But when I pulled out my calendar, I saw that I already had an appointment that day. This was the only day they could offer me. The other doctor, Dr. C, is also hard to schedule, but not as hard as Dr. T. Technically I had time to do both the same day, but I knew I would haven’t have the energy for both. I figured I’d take my chances. I took the new appointment. Now I could go to my support group!

Ok, it was time to call Dr. C. She was booking into July (and this was mid-March.) I could wait if I had to, but it wasn’t ideal. But wait, they’d had a cancellation later in April! This would mean seeing Dr. C the day before seeing another doctor, Dr. H, and each involves a lot of driving. Still, it seemed like the best possible option. I took it.

It was an odd set of coincidences, but somehow it seems to have worked out. My biannual dental appointment, my quarterly rheumatology checkup, my annual determatology checkup, and several followups all just happened to fall in the same 3 weeks. Such is life when you have multiple chronic illnesses.

After some juggling, each doctor is now in a time slot. And who’s “out” like in the game? I’m not sure, but I think it’s me.

I just solved a huge mystery. My doctors agreed that it makes total sense. But they didn’t think of it. I did.

It’s not easy to research a health condition. It can feel impossible when you don’t have a diagnosis. I went to the library when my symptoms started, but I didn’t find anything. That was in the pre-household-internet dark ages of the early 1990s. When I got online a few years later, I tried again, but I didn’t find anything. Years later the internet had more information it on so I tried again, and again, no luck. It was looking up symptoms. I didn’t have a diagnosis yet.

11 years after my symptoms started I had a diagnosis, but it wasn’t very helpful. Then I got more diagnoses. And more. And more. Still, I couldn’t piece together the puzzle. I was overwhelmed. I gave up.

One day in the library I was reading a novel and I suddenly had the urge to get rid of (or at least ease) my daily nausea. I found some books, and my journey began.

I was fortunate in many ways. The brain fog was bad, but I was still able to read. It was slow and torturous, but I did it. I was educated enough to make sense of some difficult matter. I had just enough diagnoses to follow the right breadcrumbs. I had a fantastic library at my fingertips. I found the right books when I was in the right mindset. I was lucky. But I also worked damn hard. It took many, many months to get through those books. And it was worth every minute.

I’ve noticed lately that I have a lot more free time now that I’m not always studying those books and reading websites and following Facebook groups. It’s not that I’m cured, but I learned enough to get stable, and I was ready to take a break before tackling the next thing. I’ll do it at some point, but now I’m resting.

A couple weeks ago I was having bad brain fog. (I still am.) It came on suddenly and I didn’t know why. Maybe it was the estrogen I’d recently started again for my PCOS (polycystic ovary syndrome)? I could imagine why that would make a difference, but that was the only change in my medications. Or maybe it was the change in seasons? I always have trouble when the seasons change, especially in the spring. I checked with my naturopath. She agreed estrogen itself wouldn’t have this effect, but maybe the fillers would. Or it could be the change in seasons. But that didn’t feel right. I know how that feels, and the symptoms, their degree, and the style of onset just didn’t feel like it came from the start of spring.

There was nothing to do but wait and see. I hate that. But I had no choice, so I waited. Then the other day I looked in the mirror and noticed one eyebrow was thinning near the end. That was odd. It’s a classic hypothyroid symptom, but my thyroid has been stable! I have Hashimoto’s Disease, so antibodies are attacking my thyroid. In theory that means that I’ll need to adjust my medications over time, but my immune system has been calmer lately. And besides, wouldn’t the onset of brain fog be more gradual? It didn’t seem right.

Then a few hours later it hit me: the estrogen! I’d read in my research that estrogen affects the thyroid hormone delivery system. I’d paid attention because at the time I was taking estrogen for my PCOS. I went off of it later. If the estrogen I started a few weeks ago was binding those thyroid hormones, then it could have made my current thyroid dose partially ineffective and caused me to become hypothyroid again! This explains other symptoms, too, like my slight depression, moodiness, and increased appetite.

I emailed my naturopath. She agreed. I emailed my thyroid doc. He agreed. I’m getting blood work done tomorrow. There’s no doubt in my mind that I’m right, but the blood work will confirm it and then the doctor can write me a new, higher prescription.

No doctor was going to catch this. That was clear. I was going to continue to get worse and worse and maybe, just maybe, someone would have eventually realized it was my thyroid. But how sick would I have gotten? Instead, we caught it early – I’ve only been on the estrogen for 3 weeks. With any luck, by next week the brain fog will have lifted and I’ll feel stable again!

Being a detective isn’t easy, but it’s necessary. No one cares about my health more than me. No one will fight harder for my health than I will. And no one can understand my body better than me. Someone else would look at my history and say that this was the same thing I deal with every March. Only I could know that it wasn’t because it just didn’t feel like it.

Think about what you know about your body and your health that no one else can know. Then, when you feel up to it, consider doing a little reading. And please come back here and let me know how it goes!

Do you do your own research? Have you felt it was worthwhile? Please share your experiences, good, bad, or otherwise, in the comments!

Once upon a time there was a woman who worked most of her life. She babysat at 12, worked summers starting at 14, got good grades in school while doing a work-study program, went to college and graduate school, held many jobs during school and held more after each graduation, and always did her best. One day she got sick. She was too sick to work. The government said they’d give her a small amount of money (after much fighting and pleading on her part.) Some people said she was lazy for not working harder, but she knew better. She was just too sick to work. Besides, all those years that she worked she paid into the fund that was now paying her. She worked on improving her health. One day she felt that she was ready to earn a small amount of money. She wondered what would happen if she ever wanted to earn her own living again. So she did the math….

I can accept that I might never be able to get off of benefits. I don’t like it, but I can accept it. My health has improved and stabilized to a point that I’m happy with. Yes, I would like to feel better, but if I never do, I can manage at this level. The thing is, that could be a problem financially. Thankfully, social security disability insurance (SSDI) allows recipients to earn up to a certain amount each month while keeping benefits. I believe right now that amount is $1050. If I could earn the maximum, I could get by. Barely.

But the truth is, I’d love to get off of benefits if I could. I have always been self sufficient, and I would like to return to that. I prided myself on my independence. On top of that, I have control issues. It’s no wonder, when the biggest thing in my life – my body – is so out of my control. I hate the idea of relying on the government for my income. As I mentioned the other day, some politicians have suggested cutting SSDI by 20%! I’d much rather control my own income and larger financial situation. Sure, a boss can always fire me, and working for myself is no guarantee, but it still feels safer. That’s how control issues work.

So I decided to do the math, just out of curiosity. It started slow: how many hours each month would I need to work in order to earn $1050? Well, at $10 per hour I’d have to work 100 hours. That’s 20 hours per week. Well, that’s not happening any time soon. But I could probably earn $20, so that’s 50 hours/month. Ok, that’s more like it. I might be able to manage that in another year or two. But I can earn more for some of my skills, like my financial work, so maybe I could average $30 per hour? Somewhere in there I’d lose a few of my benefits, like fuel assistance and food stamps, but I’d more than make up for that. I played around, and felt ok about the options.

Then I started doing the math on what it would take to get off of all of the benefits. And that’s where it all fell apart. First, I’d have to replace my SSDI income. Ok, that’s tough, but I might be able to manage that at some point. Then I’d have to pay for health insurance, since I’d have lost both Medicare and Medicaid when I started earning more money. Well that’s stretching it, but I could still manage. Maybe. Eventually. It felt tight, but doable, until I remembered: taxes! SSDI income isn’t taxable, and I doubt that $1050 per month would be taxed much, if anything. But at these new income levels, I’d have to pay taxes. When I add it all up, I figure I’d need to earn at least $4000 per month. At least. And that’s just to break even!

So I can earn $1050 per month while getting SSDI, or I could earn at least $4000 per month, and the two would be equivalent from a financial point of view. But one way I’d have time to take care of my health and the other way I wouldn’t. Realistically, I just can’t see working full time again health-wise. It would have to be part-time work. And as much as I want to get off of benefits, it doesn’t seem worth it if I’d be breaking even, so I’d need to earn more to make it worthwhile. And that puts me back at my old salary (which was just slightly over $4k/month.)

It would be nice if there was a gradient of some sort. Like, if I earned $1050 I’d get full SSDI, and if I earned $1200 I’d get $150 less than full SSDI. That would be a great way to transition. But as it stands, it’s all or none.

I’m not saying it’s impossible that it’ll ever happen, but it sure feels unlikely that I’d be able to earn my old full time salary while working part time.

If you’re on benefits, have you ever considered getting off of them? Have you tried? How do you feel about it? Please share your thoughts and experiences in the comments.

Sometimes I forget what it was like to have a steady liveable income. My new “normal” has become so ingrained, it’s easy to think that’s how it always was. Then I’ll wish I could buy a new sweater, for example, and I’ll remember there was a time when I really could buy a new sweater any time I wanted to.

This is one of those things that can be hard to understand until you live it. Politicians talk about cutting social security disability payments because they see the huge amount the program costs overall. They don’t consider what it’s like for an individual to have to actually live on the average payment of less than $1200 per month. (Full disclosure: my payments are above average. Of course, the cost of living in my city is also above average. I haven’t done the math to figure out if the ratios are the same or not.)

Of course, it’s all relative. There are people who aren’t on SSDI who only earn that much. There are people who earn $150,000 per year and are in debt. The former has their own set of issues that need addressing on a federal and state level. The latter has options, though. I miss having options.

Once upon a time I earned around the average national income of $50,000. Even in one of the most expensive cities in the country, I had no problem living on that salary. I just avoided spending money on certain things. I saved money every month. So while I couldn’t shop endlessly or at high-end stores, I could definitely afford to replace worn out clothes. That was my “normal” for many years.

It’s been a cold winter and that’s fine by me! The cold is much better for my body than the heat, so I’m happy about it. But unfortunately, my wardrobe is not. I have many t-shirts, but not many sweaters. The ones I have are old and out of style. Some are falling apart. They are pilling and developing holes. But I keep wearing them because I don’t have a lot of options. Sure, I have some savings, but SSDI only covers about half of my expenses each month and I need my savings for that other half. I can’t go throwing it around on clothes that I don’t really have to have.

It’s not the clothes that I miss, it’s the ease of of those purchases. It’s knowing that any money I spent would come back into my bank account and then some. It’s knowing there was always more where that came from. It was knowing that I had years, decades, to keep earning and saving.

And that security is what’s really been taken away.

Despite what certain politicians think, I would rather be working if it meant getting that security back. But the truth is, that’s just not an option for me right now.

Some days are obviously really good and some are obviously really bad. Some are in the middle. I generally feel happy as long as I don’t feel really awful physically. But there are exceptions to every rule.

Today I feel off. My pain isn’t too bad, maybe a 4 on my pain scale, so I’m ignoring it. I’m not particularly fatigued. I have a long list of things to do, and I’ve been doing them, bit by bit. So really, it’s a fine day. But I feel…. off.

It’s been dark and overcast. For someone with Seasonal Affective Disorder, that’s a recipe for trouble. I also went back on a med this week, so that could be contributing. But of course, there’s no way to be sure. I’m not sad, exactly, just a bit down. Nothing is wrong. My family is great, my friends are awesome, my health is relatively stable. I didn’t have anywhere to go today but I didn’t feel stuck inside, I just thought of it as an opportunity to get more things done around the apartment. Then again, normally I would push myself to get out and take a walk, but today I didn’t. I knew I needed to; the more I sat, the more I felt my joints stiffen up and become more painful. But then I’d look at that dark sky and I had no desire to go anywhere.

I’m not fighting it. If I felt this way every day, there would be a problem and it would need addressing. But one day? I’m giving myself a pass for one day of feeling this way. I will let myself feel a bit down. I will spend more time than I otherwise would on the computer. I will watch silly tv. And I won’t stress out about it or feel guilty about it, because what’s the point?

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Disclaimer

I am not a doctor or any other sort of medical professional. I am writing my own thoughts, feelings and opinions here. Please consult your own medical professional for advice on your own particular situation. You are responsible for your own choices.